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Q&A: What do you wish you had known at the beginning?
Perspectives on Spinal Cord Injury
Q: What do you wish you had known at the beginning?
People with new spinal cord injuries make surprising discoveries about how to deal with their injuries as time goes on. We asked them to share their most important insights — the ones that would have made their lives easier, if only they had known them at the start. Among the most valuable insights are: you’re not alone, life will go on, a spinal cord injury doesn’t change who you are or define your life.
For more insights from people living with spinal cord injuries, click on a video below.
That is was going to be a journey full of heartaches, the heartaches you have for your child. And to see that part of it, the loss of friendships, the hurt that you’re excluded from things sometimes because 17 year-olds don’t want to have to take care at a party, or you know. I think the heartaches you see as your child go through.
If there’s something that’s been really, really important to me, I’ve been able to find a way to do it. Your problem-solving skills are going to get totally fine-tuned. You need to be knowledgeable about resources and you need to be a good advocate for yourself. And interestingly enough, I sometimes get comments from non-disabled colleagues that I have good advocacy skills that they don’t because of living with disability. So, I guess that would be what I wish I would’ve known from the beginning.
I guess I wish I knew that I was going to live on for 35 years, plus. Early on, I'm not sure what the doctors told my parents, but I don't think it was a great prognosis, so I think it scared them. I didn't get that word, so that was probably a good thing. But I guess I felt, early on, that there wasn't much of a future, or I didn't, I didn't know what kind of future there was. So, that fed into depression, and you know, "what's the point?" you know. And, you know, it's not the case any more, and there are more and more examples out there for you to see, and to get in touch with, and emulate.
I wish I’d known then to ask more questions at the hospital, and just pinpoint them and say, “What’s going on?” Instead of just kind of being a bystander, you know, wish I’d been more proactive in finding out what the situation was.
I wish I'd known that there were other kids just like me in, in communities out there, going through what I'm going through, I wish they were there. I wish that they brought these kids to me or showed them because the only place I saw them was at the hospital. And, when I went home, I saw none of them, and, I felt alone and I just felt that I'm the only one and, I really wish I that saw more kids like me. That would have gave me a sense of normality a whole lot quicker.
I wish I had known that this was actually going to be a better thing for her, that this was really, that this really was a window opening and not a door closing for her. Even though there was a period of time, and there are periods of time when it's really hard, her life is so much better, all of our lives are so much better. You know, we, the time we spend together is more special now, and we make more of a point, you know, to do things together. And you know, she's one of those people where she's always, she's always available, even though she's always really busy. You know what I mean—I've never understood that about my mom. She's always one of those people that I can call anytime of day, and I can always get her on the phone, and she'll stay on the phone for as long as I need her to. But, she's so active in so many of the things that she does, and I wish that I had known that her life was going to be better as a result of all of it.
I didn’t know that there were so many people who I could relate to what I was going through. I didn’t know how to get in touch with those people. I knew of support groups, but I really didn’t know what that meant. If I had known then what it meant, I would’ve taken advantage of it because it would’ve helped us know that we weren’t alone. And sometimes, disability can really at times make you feel alone because in your home, you’re the only one who’s there. When you’re out in the real world, you’re one of millions of people, and you don’t know that maybe around the corner, there’s someone in a similar situation as you. So, if I had really known that there were groups of people and places we could go to feel like this was our second home, I think we could’ve managed our difficulties a little better.
I wish I had known how critical that watching skin, that skin care was. And that everything that happens to your skin can be prevented if someone's watching over it, and what to do to prevent sores from happening, because it is preventable, is totally preventable. And it wasn't, I really had a disastrous time with it, disastrous.
What I know now that I wish I had known at the beginning? Probably I knew two years in into the injury, and that was that it was going to be a forever kind of condition, probably absent some miracle. I think we are closer to a cure than we’ve ever been but still maybe decades off. And it is just the realization that this is how life is going to be, and I’ve got to figure out how to be adaptable and engage that.
That I can survive because there were a lot of questions. I remember asking Robert Atony, I think that’s his name, he works here, and he stopped by, he saw me struggling in therapy one day. And he started telling me how he did things, and he said, “well, do you have any questions?” I said, “how do you put gas in your car?” He said, “well, you just park your car, and you get out and put gas in it.” He made it seem so simple. And so, yeah, I think just some of those answers in the beginning.
That it is a process, that you're not in the crisis part of it forever. There is some light at the end of the tunnel—it's a terrible cliché but...
I wish I had known more people in a wheelchair when he was injured. To really know the different programs that are out there, and the different things that we could get involved with.
Now, five years out, I'm surprised at how normal our lives have become. To a large extent, we're in many respects to where we were before the accident, and I never in the early years thought for a moment that we would reach that point. Certainly, we have to do things differently; family vacations are different and there are some things we can do, some things we can't do. But we're still able to pretty much do all the things as a family we did before. And instead of Molly's disability being front and center, it's become sort of a sideline—"Oh yeah, by the way we have to do it differently because of this." It's not front and center any more which is good.
That there's a future, right away. Some people may think that, "oh my God, this is the end of everything," and it's not.
I wish that I had known how well my brother was going to deal with it. If I had known that he was going to be okay, it would have been a lot easier for all of us to deal with.
A friend of mine, a close friend of mine, he said, “It’s a good thing it was you, not me because,” he says, “I would’ve walked away from it. I couldn’t handle it.” And when I asked him why, he says, “It just tears your life a part.” And it does, like I said, at the time, yeah, it tore your life apart for a couple of years, but after those two years, our life is just as full now as it was before the accident. So, I think you just have to be brave for the first two years, that’s what it is. You know, just be brave, it will come.
It doesn’t mean there’s not still bad ones out there, but you just have to. I know I wish I would’ve been told more about devotees on Facebook, because devotees are like sexual predators for people with disabilities, it’s disabled devotees. And on Facebook—like I remember I read an article at Shepherd and it was of a woman getting married and—someone added me with a different name on Facebook, and had mutual friends, and it was all random people I didn’t know, who would send weird messages, and they’re devotees. And I couldn’t count the number of message adds I’ve had of people that look like devotees. It’s profiles without much information, few friend interactions and it’s scary. They take your pictures and use them to get other people to be friends with them.
I wish I would have known about a couple different programs that were out there for me that I didn't have a clue about until other peer mentors came and told me years later that this was in existence. I didn't know about things like that.
I wish that I’d known from the get-go of my spinal cord injury that strangers would come up to you constantly. And the first question they ask is, "What's wrong with you?" And the second one is, "Can you have sex?" Complete strangers, all the time. So, I would say be mindful of that, think of how you’re going to respond because it will happen all the time .An d keep in mind that these are teaching moments even when you don't want to tell somebody all your business. And you don't have to tell anybody, like figure out the answer you’re comfortable with, but have some kind of response on hand that you can throw out because it's going to happen all the time.
That you're not alone. That not only do people with spinal cord injuries have gone through things very similar to what you've gone through, but that there's a whole disability community out there that understands you in a way that people without disabilities can't, even as much as they want to. I mean your family is, hopefully, your family and friends are always supportive, and that's a very wonderful thing to have that. But to know other people that have gone through or are going through what you are going through, have been through, is incredibly valuable. I think that just discovering that there's a community out there that has been there too is something that took me a while to find, and I wish that I had known about it in the beginning.
How the body operates from a physical standpoint a little bit. How my metabolic rate would be different, you know, when it came to calorie consumption. Because in my prior life, that was something I paid very close attention to as a triathlete, and then not understanding exactly what that would do or not do, you know, I could’ve set myself up a little bit better at times.
I wish that I knew that what other people think doesn’t matter as much. Right, like, so people look at you—so you’re different, so whatever, or so they may have to make accommodations for you to get into something. Like, I used to be so self conscious of that, I wish I knew that, like, it doesn’t matter. I could have gotten over this a lot quicker.
I think the whole process, if you can do it without any drugs, that's great. But if you have to have drugs—and I seem to have to have them—don't be afraid to take them. Because a lot of people think, "oh I don't want to get hooked on drugs and have to take them the rest my life," because that's really not what it is. You'll take things and then it will work, hopefully forever for you, but if not, you'll stop taking something and maybe start taking something else. So, I'd say don't be afraid to take the drugs because they are very helpful.
I think in the beginning I might have fretted a little more about certain things. Just take for instance, catheters. We were paying so much money in the beginning, and then we went online to order them, and now we’re paying half the amount of money. So just little things like that, and not fretting over it as much as we did before.
If I would have known then what I know now, I probably would have been a lot more frugal with what money I had saved. Maybe paid off my house or something like that, than what I did do with the money.
I wish I would have automatically just had known that I was always going to be myself. I don't know what I thought the wheels were dramatically going to do to me, but I just wish that I would have known that the things I enjoyed before, and the way I was before, it was all going to be the same. I would just have to go about things in a different way.
Life will go on. I made a lot of assumptions in the beginning that my expectations should not be what they were before my accident. I carried around certain stereotypes of people with disabilities—didn’t have families, didn’t have husbands, and spouses, and those kinds of things. I really tried to push my own husband away from me to try to protect him, but did it cause a lot of problems? Early on, probably. I was pushing away in the beginning and then needed him so much the next day. I’m sure the poor man was going through so much. So, looking back now, I wish I had kept my expectations where they should’ve been and just charged forward. It would have been nice to know that now, how content I am now, that I would be able to get that someday again. Because in the beginning, you don’t think you’re going to be a content, happy person for the most part. This will always be an overwhelming challenge that you won’t be able to get over, and then I was wrong.
That everything would’ve been okay. That he was going to be alright. But then again, it’s been a learning process. We have become stronger. So, I don’t know if I would’ve wanted to know then what I know now because we wouldn’t have fought the battle that we fought.
I don’t know, because I think in the beginning it’s difficult, it’s really difficult to talk to hindsight. Like I said, I’m a peer support ,and what I do is I go in the patient’s rooms and I say, “well, this could be your future,” and no one wants to hear that because everybody wants to walk. And I don’t really know if there is anything you could say to someone who is nearly like first injured, disabled, “it’s going to get easier, it’s going to get better.” Because the truth of the matter is that it will be, but it’s going to be hard at first. So, I think that if I can tell you about anything it would just be like trust the process, just trust it.
I think the challenge of dealing with a disability has made my life good. If it had all been handed to me, I don't think I'd be where I am now, and I'm in a very good place now.
I think that what I now know, from the moment that Ryan was hurt to what I have learned in these two years since, is that there is life after spinal cord injury. That when I was told that “Ryan is paralyzed,” I thought that meant our lives were over. And I learned that it would just have to be lived differently, it wasn’t over, it was far from over. And so, it would’ve been very comforting to know then that there was still a life after spinal cord injury, and that we could still have a marriage, and a family and just everything that we dreamed of having before. It was just going to look different.
The transition from inpatient to going home. I wish there was more education or knowledge about how to transition from such a catastrophic event to going home. And, you don’t have nurses and doctors around 24 hours, you don’t have psychologists and people to talk to on hand. And that was just—I wish I would’ve known how traumatic that was. Like I said, even though I had the support system, when you don’t have the medical people, or like you say, the nurses to physically help you. My mom was there, but physically she wasn’t able to do a lot of the things that the nurses and the doctors were able to do. So, just maybe knowing how that transition would be would’ve helped a whole lot more to know how you transition from inpatient to going home.
I had one gentleman tell me, because I kept on thinking about all the things that I can’t do, one of the guys I play tennis with before I started playing tennis, he goes, “look at all the things that you can do, because there’s so many things, once you try to do all those you’re going to forget about the few things that you can’t do.” Probably one of the best pieces of advice I got. It was so vague at the time that it really didn’t hit me. So, that’s huge, I mean there’s definitely individual things that I wish I knew. I mean hand controls in cars because, of course, when this first happens you’re like, “I’m never going to drive again.” “I am never going to do this again.” I didn’t think I could ever get into my mom’s house again. But there’re so many different adaptive equipment and things of that nature that are out there. Snow skiing was always a big part of my life, I have gone on yearly vacations, I had never even seen a sit ski before. That’s what I said there’s adaptive equipment for everything. If you want to do it they can find a way and you don’t really realize that until the injury happens—and you’re the one that going to use these things. So, really that unknown is the hardest first part, and knowing that there’s all that stuff out there, would’ve helped in kind of giving you a little more positive outlook.
Oh goodness, in the beginning I wish that I would’ve known—there was nobody that was a mom, and I knew that could have children and that—how to raise kids sitting down and rolling all the time. Like this was pre a lot of internet, and a lot of Google searches, this is the early 90s and I just, there wasn’t a lot of community support. And so, I kind of had to figure out things on my own, but I really wish I would’ve known more about what it was like to parent in a wheelchair.
I wish I’d known someone else that was in a wheelchair. I think it’s very difficult to live your life, and suddenly find yourself in a wheelchair and not really know anyone else to talk to about it. I had no friends, or no one else that already knew that was in a wheelchair. That was difficult in the beginning.
Managing the aspect of bowel and bladder care is really a huge aspect to independent living and transitioning. We went out for our very first doctor's appointment out of the nursing home to Columbus in August, so about two month after Mike's accident, and we didn't even bring a change of clothes. We didn't bring, I think we probably brought, an extra diaper and other things that Mike needed, but the concept of not even being prepared for a six or eight hour day like that was just, you know, now comical, but you live and learn each of these mistakes along the way.
I wish I had known that everything was going to keep getting easier. And that at times when I felt like things weren’t getting better, and I felt like I had reached some sort of plateau, and that was going to be it, and I was not going to get any better than I was, that that wasn’t true. And, I wish I had known that I was going to keep learning to do things, and that even years and years down the road things were going to continue to get easier, and I was going to continue getting more independent. And not to worry so much about getting stuck somewhere and not getting better. To know that’s not really a concern as long as you keep working; you’ll keep learning do things.
I wish I had known that, like, things are really still all up to me and I can still live my life on my terms. You know, that there's a way around most things, if you, like, look hard enough. Like I remember, kind of, I don't think anyone expected me to move out any time before, like, ten years, and after a year, I was ready to go. So, I just wish I had known that I could still, that I still had all my choices, which I know now, but I might have gotten moving quicker.
When my husband was in rehab, he had had a broken wrist, so didn’t get maybe the whole treatment that he could have gotten, or the extent that he could have gotten. Of course, a week after her came home; he got released to do more. He wanted to come home, he probably could have gotten approved to stay longer, he probably should have gotten approved to stay longer. I would probably say that if, in that situation, I wanted him home, I know he wanted to come home, but for his movement, and his ability to do things for himself, he probably should have stayed longer. You know, but three months is a long time to be away from your family, and your house, and your life. He wanted to go back to that, and I understood that at the time, but looking back it probably would have made our lives easier had he stayed another month, and gotten the additional in-house therapy he could have gotten.
What I know now that I wish I had known at the beginning is that life goes on, life can be good, and that it can be just as full as any other life is. And had I known that, I would’ve been spared a tremendous amount of heartache. But, I’ve seen it happen in my own life, so I can believe it.
I wish I would have known more about skin care. Because she got a wound, she got a bedsore that turned into a wound that turned into a Category 4 wound that went septic, on our wedding anniversary. And if I would have had more knowledge, and instead of being the kind of person saying, "you take care of it, you're the nurse," I would have been on top of it, and it would have never happened to her. We would have never lost the time that we lost in the hospitals for operations, aggravation, wound VACs, terrible, terrible things, just—I wish I would have known a lot more about skin care. And every day I check from her toes to her shoulders, I make sure everything is fine.
So, I don’t know that there’s any one thing. I know clearly that as soon as I connected to other people who were having this same experience as me, the better it became. I mean we refer to it here as “been there done that.” So, as soon as I was able to hang out with “been there and done that’s,” and have leg bag jokes, and have spasm jokes, and have quad jokes, and stuff like that, the sooner I was able to connect with that, the better things got.
I wish I had known that surviving the trauma, the incident was going to be the easy part. It’s what comes after that’s the hard part. I wish I had known that.
I wish that I didn't have to be so scared all the time that he was going to die, or I was going to lose him. And that I lived on eggshells so long afraid that he was going to get sick, or when he had a seizure, is he going to lose some of his competency? Is he going to end up in an institution because, you know, it just isn't working out at home? I was on eggshells for so many years, and I think I lost a lot of happiness during that time, and if I just relaxed and enjoyed the moment more, and not worried so much, I'd like to have that time back.
If anything, I wish I would’ve known that recovery is, you know, it happens. It would’ve saved me a lot of stress and grief if I knew that I’d actually be able to function, and continue pursuing my dreams and living the life that—not necessarily the life I had imagined for myself, but some form of a life that I want, that I still have, still would have that freedom to pursue it. If I’d known that from the beginning, that would’ve saved me a lot of stress.
I guess not to be, like, scared, of things I guess, and trying new things. Because, I went kayaking recently, and I was scared to death, but it was great overcoming the fear, getting into a kayak, it was great. So, things like that, just being more open, I guess, to new things.
I wish I would’ve known to be more better prepared. It took me a long time to remember to bring extra things, bring extra clothes, bring extra napkins, just in case. You never know what might happen, it’s taken me way too long to be prepared. You never know what’s going to happen. So, if you’re prepared for a worst-case scenario, then you don’t have to worry about it.